Meaningful engagement of patients and families in a complex trial of advance care planning in primary care

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data through surveys, interviews, and observations; and using data to inform revisions to the engagement approach. We also tracked PFA activities and ideas and documented how they impacted the trial. This article summarizes our experience and describes the challenges we faced and how we addressed them. We also outline key lessons learned about encouraging participation; approaches to preparation and coaching; fostering equity across PFAs and other roles in the trial team; creating a range of opportunities that match PFA skills, preferences, and expectations; the importance of regular feedback; and the need for training of all trial staff. Our experience demonstrates that successful and impactful engagement is possible but requires consistent commitment and intentional dedication of sufficient resources. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens

Managing the Risks of Extreme Events and Disasters to Advance Climate Change Adaptation: Special Report of the Intergovernmental Panel on Climate Change

This Special Report on Managing the Risks of Extreme Events and Disasters to Advance Climate Change Adaptation (SREX) has been jointly coordinated by Working Groups I (WGI) and II (WGII) of the Intergovernmental Panel on Climate Change (IPCC). The report focuses on the relationship between climate change and extreme weather and climate events, the impacts of such events, and the strategies to manage the associated risks. The IPCC was jointly established in 1988 by the World Meteorological Organization (WMO) and the United Nations Environment Programme (UNEP), in particular to assess in a comprehensive, objective, and transparent manner all the relevant scientific, technical, and socioeconomic information to contribute in understanding the scientific basis of risk of human-induced climate change, the potential impacts, and the adaptation and mitigation options. Beginning in 1990, the IPCC has produced a series of Assessment Reports, Special Reports, Technical Papers, methodologies, and other key documents which have since become the standard references for policymakers and scientists.This Special Report, in particular, contributes to frame the challenge of dealing with extreme weather and climate events as an issue in decisionmaking under uncertainty, analyzing response in the context of risk management. The report consists of nine chapters, covering risk management; observed and projected changes in extreme weather and climate events; exposure and vulnerability to as well as losses resulting from such events; adaptation options from the local to the international scale; the role of sustainable development in modulating risks; and insights from specific case studies

Sea-ice dynamics in an Arctic coastal polynya during the past 6500 years

The production of high-salinity brines during sea-ice freezing in circum-arctic coastal polynyas is thought to be part of northern deep water formation as it supplies additional dense waters to the Atlantic meridional overturning circulation system. To better predict the effect of possible future summer ice-free conditions in the Arctic Ocean on global climate, it is important to improve our understanding of how climate change has affected sea-ice and brine formation, and thus finally dense water formation during the past. Here, we show temporal coherence between sea-ice conditions in a key Arctic polynya (Storfjorden, Svalbard) and patterns of deep water convection in the neighbouring Nordic Seas over the last 6500 years. A period of frequent sea-ice melting and freezing between 6.5 and 2.8 ka BP coincided with enhanced deep water renewal in the Nordic Seas. Near-permanent sea-ice cover and low brine rejection after 2.8 ka BP likely reduced the overflow of high-salinity shelf waters, concomitant with a gradual slow down of deep water convection in the Nordic Seas, which occurred along with a regional expansion in sea-ice and surface water freshening. The Storfjorden polynya sea-ice factory restarted at ~0.5 ka BP, coincident with renewed deep water penetration to the Arctic and climate amelioration over Svalbard. The identified synergy between Arctic polynya sea-ice conditions and deep water convection during the present interglacial is an indication of the potential consequences for ocean ventilation during states with permanent sea-ice cover or future Arctic ice-free conditions

How parents choose to use CAM: a systematic review of theoretical models

Background: Complementary and Alternative Medicine (CAM) is widely used throughout the UK and the Western world. CAM is commonly used for children and the decision-making process to use CAM is affected by numerous factors. Most research on CAM use lacks a theoretical framework and is largely based on bivariate statistics. The aim of this review was to identify a conceptual model which could be used to explain the decision-making process in parental choice of CAM. Methods: A systematic search of the literature was carried out. A two-stage selection process with predetermined inclusion/exclusion criteria identified studies using a theoretical framework depicting the interaction of psychological factors involved in the CAM decision process. Papers were critically appraised and findings summarised. Results: Twenty two studies using a theoretical model to predict CAM use were included in the final review; only one examined child use. Seven different models were identified. The most commonly used and successful model was Andersen's Sociobehavioural Model (SBM). Two papers proposed modifications to the SBM for CAM use. Six qualitative studies developed their own model. Conclusion: The SBM modified for CAM use, which incorporates both psychological and pragmatic determinants, was identified as the best conceptual model of CAM use. This model provides a valuable framework for future research, and could be used to explain child CAM use. An understanding of the decision making process is crucial in promoting shared decision making between healthcare practitioners and parents and could inform service delivery, guidance and policy